Updated: Oct 20
Surveys looking at the impact of hormones on Parkinson's Disease (PD) symptoms in women in the last year have focused on the impact of the menstrual cycle and have shown that up to 80% of women have experienced worsening of their symptoms around the menstrual cycle both in the week before and the week of their period.
This most recent survey of women with Parkinson's PD (WwPD) looked at whether the peri-menopause or menopause also causes PD symptoms to worsen. This survey was disseminated in partnership with Dr Eva Bunting (Neurologist) and Jane Bryant (Parkinson’s disease specialist nurse) of the University Hospitals Sussex NHS Trust, UK and The Women's Parkinson's Project (www.womenspdproject.com).
87% of respondents were diagnosed with PD under the age of 60.
169 people took the survey including one transgender woman and one genderqueer. 92% were of white and 1 Black/African American, 6 Hispanic/Latino, 3 Asian/Asian American, 2 Mixed race. Respondents were from northern and southern Europe, Canada, USA, Australia, New Zealand, India and Anguilla. 80% were under the age of 65; 48% under 54 years and 5% under 44 years old.
87% were under 60 at diagnosis - 14% were 40 and under at diagnosis, 40% between 41 and 50, 33% between 51 and 60 and 13% over 60 years of age.
6% experienced premature menopause and 26% early menopause.
Of 158 respondents - 6% reported menopausal symptoms starting 40 years and under otherwise known as premature menopause; 26% were between 40 and 45 otherwise known as early menopause. 45% were between 46 and 50 years old and finally 25% were between 51 and 59 years of age. Overall 75% were =/<50 years old when they started noticing menopausal symptoms.
These results are in line with research that has shown repeatedly that early menopause is associated with a higher risk of PD as shown in the figure below. The bars to the right hand side indicate higher risk.
Figure from Unda, S. R., Marciano, S., Milner, T. A., & Marongiu, R. (2022). State-of-the-art review of the clinical research on menopause and hormone replacement therapy association with Parkinson's disease: What meta-analysis studies cannot tell us. Frontiers in aging neuroscience, 14, 971007. https://doi.org/10.3389/fnagi.2022.971007
Another study predicted that each year of delay in age at menopause was associated with a 7% decrease in PD risk. This effect was seen only among women and not among men for whom they generated a hypothetical age at menopause. Therefore the authors stated "biological factors related to a later age at menopause – possibly a longer exposure to female sex hormones or other biologic causes of later menopause – might be neuroprotective and prevent or delay a PD diagnosis in women."
3.5% of our survey respondents reported having an oophorectomy and almost 9% a hysterectomy. Again, research has shown an association between oophorectomy and risk of PD but not for hysterectomy but when a hysterectomy occurs with a oophorectomy there is an increase risk of PD. There are conflicts amongst the studies and more research is needed urgently so as to potentially protect women from developing PD.
Women with PD experience menopausal symptoms that mimic PD symptoms.
We asked WwPD what peri-menopausal or menopausal symptoms they were experiencing. The figure below shows that the most commonly experienced symptoms included fatigue, sleep disturbances, urinary urgency and night-sweats. Noticeably. all the symptoms could be also PD symptoms. This commonality between PD symptoms and peri-menopausal/menopause symptoms could potentially be preventing women from getting the treatment they need as they head into menopause and during menopause. This overlap of symptoms may perhaps be a reason for more women being diagnosed over the age of 65 when they are not suffering from menopausal symptoms.
Over 30% of women report a worsening of PD symptoms during peri-menopause and menopause.
32% of WwPD reported a worsening of their symptoms in the peri-menopause/menopause. Just over 65% were not sure if their symptoms had worsened and just under 2% said their PD symptoms had not worsened. The fact that menopausal symptoms mimic many PD symptoms may be the reason why so many women were not sure if their PD symptoms were worse during the peri-menopause and menopause.
Perimenopause/Menopause causes worsening of non-motor symptoms as well as motor symptoms.
Over 30% of WwPD reported that many of their PD symptoms were worse during the perimenopause and menopause with non motor symptoms (NMS) being most affected such as difficulty sleeping, anxiety, pain and depression. Included in the NMS were problems with executive functioning such as difficulty concentrating and difficulty multi tasking. The top motor symptoms affected were tremor, stiffness and longer 'off periods'.
Hormonal treatment during perimenopause or menopause.
Of 51 WwPD who answered the question on using a hormonal contraceptive to treat their menopausal symptoms, just under 30% reported taking hormonal contraceptives.
51 WwPD answered the question as to ever taking hormone replacement therapy (HRT), of which 37% of WwPD reported taking HRT.
42% reported that HRT had a positive effect on their PD symptoms.
Of the 19 WwPD who took HRT 42% reported a positive effect on their PD symptoms. 21% were unsure which again may reflect the similarities between menopausal symptoms and PD symptoms. 21% reported that their HRT did not have a positive effect on their PD.
When asked if they were offered anti-depressants as an alternative to HRT during the peri menopause/menopause, of 156 respondents, almost 19% had been offered anti-depressants.
Some women shared their experiences of using HRT:
"I do feel the menopause had and still has a huge impact on my PD but there is no information available or anyone to discuss it with when I’ve asked about contradictions."
"Started HRT and felt fabulous. Parkinson’s symptoms improved too. Feel there’s definitely a relationship between estrogen decline and Parkinson’s".
"Great survey! I recently started pellets after trying other HRT. It has helped me tremendously!! Symptoms relieved by the HRT are very noticeable! Some of these symptoms I’ve mistaken for Parkinson symptoms, which I now realize are more hormone symptoms."
"I Thank you for doing this survey! My personal experience is that I really need my HRT to be able to do all things that I do to prevent Parkinson from getting worse. When I stopped, I felt much worse in my symptoms and during that time I developed dyskinesia. I have started to take the tablets again but unfortunately the dyskinesia is still there, but I feel overall much better again."
"I still take HRT at 79. If I try to stop, I get hot flashes. Need HRT!"
"I have taken HRT since my PD diagnosis at 53. I have had to advocate for myself which might be easier for me as I am a physician."
Research is conflicting with respect to the use of HRT to prevent onset of PD, improve PD symptoms and potentially in slowing its progression. There is also concern over the risk if PD in relation to the type of HRT used - whether it is synthetic or natural. Some research has shown that synthetic progesterone formulation medroxy-progesterone acetate is detrimental to brain cells. However, there appear to be strong signals that the use of natural forms of HRT may be beneficial. There is an urgent need for research in this area.
Only 5% of women reported that their neurologist discussed the perimenopause or menopause and its impact on their PD and the use of HRT.
76% of WwPD reported not having a problem discussing hormone related issues but it seems that they are not having the opportunity with only 5% reporting their neurologist ever having discussed about the impact of hormones and their PD.
And only 27% of women have discussed their perimenopause/menopause and their PD with a Gynaecologist.
WwPD shared their experiences of discussing hormones with their neurologist:
"He said he didn't know anything about menopause."
"He does not feel qualified to discuss HRT."
"I have talked to many neurologists but no one had any knowledge about HRT."
"He just wasn’t interested."
"He says PD and menopause/change in hormonal status is not connected."
"It’s never been on the table for discussion."
"She is female but I still needed to bring up the topic."
A recent abstract, presented at the MDS Congress 2023, asked 31 Dutch WwPD who were post menopausal if their PD symptoms changed after menopause and how. 68% reported a worsening of PD symptoms after menopause. Only one of the 21 women reported that a healthcare professional had addressed the topic of possible changes in PD symptoms after menopause. They offer some suggestions for women-specific care such as adjustment of treatment, increased engagement of neurologists, and referral to gynecologist to explore hormonal therapy as a therapeutic option. They also emphasized the importance of raising awareness of the link between menopause and PD symptoms among women with PD.
A Sobering read
The results of this survey demonstrate the very obvious unmet needs of women going through the peri-menopause and menopause. It highlights some key areas for further research:
Is the diagnosis of PD being delayed in some cases because symptoms are attributed to the menopause rather than PD?
Are there a higher percentage of WwPD experiencing premature or early menopause?
Does HRT and what type of HRT help PD symptoms and possibly even slow progression and when and for how long should a WwPD be on HRT?
What non- HRT treatments are effective for WwPD?
We also need to include larger numbers of non white ethnicities as research shows that Black and Hispanic women reach their menopausal age approximately 1.2 years earlier and suffer more severe menopausal symptoms.
Our survey highlights the importance of training of neurologists, PD nurses and allied health professionals to encourage the conversation about hormones and PD and to explore hormonal and non hormonal treatment options as well as non-medicine interventions.
WwPD who account for 40% of the people living with PD globally are in great need of more personalised treatment across their hormonal lifecycle. More research is urgently needed to improve current care and perhaps through understanding the neuroprotective process of women's hormones even find a solution to slow progression. There is also an imperative to protect women who are at risk of PD through hormone therapy. WwPD can also help improve care and research by asking questions of their neurologist and care team.